Labels Revisited – What I Have Learned in the 3 Years Since my Autism Diagnosis

We are all on our own journeys within this place of duality.

I began, as we all do, by just being. There was a time before I learned my own name, a time before I knew which nationality I was, a time before I learned which type of music I loved, a time before I saw myself reflected in the mirrors of relationship.

Then, I learned my name. I learned my address. I learned that that my state was one of 50, that my country was one of over 100 in the world. I became increasingly aware of the existence of others outside of myself – first my caregivers, then my siblings and playmates, then friends, community members, and, finally, the wide world of strangers I may never meet.

New dimensions opened up. The longer I lived, the greater the space became between my own inherent beingness and the renderings of myself as reflected back by the ever-increasing number of “others” in my life.

And it has been through this duality – familiarity with both the inner and outer worlds – that I have been discovering my location on the map and finding my way in the world (and from there, finding my way back to myself.)

Once, I just was. Then, I learned, through my interactions with others and the world around me, that my existence fell within certain parameters.

After over three decades of pinging between the center of my awareness and the perspectives of the external world, I discovered that my unique relationship to these parameters landed me in the minority everywhere I went.

I discovered that my natural inclinations were generally not those of the majority. I discovered, for instance, that I did not enjoy the universally loved chart topping hits that commanded the radio waves like most others seemed to.

Instead I naturally gravitated towards the more unexpected, the more avant garde, the more artistic but lesser known musical artists, and not to be “cool” or edgy or elitist, but because that was just what I gravitated towards.

I learned from my peers that I was “odd” and that the things I loved were “odd” too. It was odd that I loved poetry as a child. It was odd that I wrote it. It was odd that I expressed myself through my own unique brand of fashion and shunned trends. It was odd that I listened to music that no one had heard of before. It was odd that I wanted to talk about meaningful subjects rather than small talk.

Gradually, I become aware that I was “different” from others. And that, really, was the first label I was given. From it, all others followed.

How am I different? Why am I different? Is it bad that I’m different?

These were the questions I found myself asking after having it reflected back to me that I was different.

Me! The person who once didn’t even have the concept of a name associated with the awareness that I just simply was. Now, I had been categorized, and it seemed my acceptance and social survival depended on getting to the bottom of which external category, exactly, I fell into.

So, I dug. And I dug, and I dug, into the wealth of information in the collective repository of our combined worldly knowledge, until I found the answers to these questions.

And, finally, at the age of 34, I had my answer: I fell squarely into the “Autistic with a PDA profile” category, according to available external metrics.

There was relief, and substantial therapeutic value, in this outward discovery. I now knew the answer to the questions: How am I different? Why am I different? Is it bad that I am different?

For a while, I swam in the refreshing waters of this relief. I let it wash over me, I let it cleanse me of shame, of confusion, of despair. I quenched a deep thirst with it. I let it renew me.

And I will never undervalue the importance of that deep well of discovery, but I now recognize it as another mirrored reflection, another way that our internal truths are categorized outside of ourselves.

I now fully recognize that this external categorization wasn’t a “truth” I discovered as much as it was a reflection of my existing beingness as seen through the lense of the perspective of others.

I now recognize that swimming in those waters of discovery, while liberating me in some profound ways, actually blunted me in others. No matter how astute the awareness that constructs these categories, they can never encompass the unrepeatable, totally unique beingness of a person.

In other words, I believe labels are absolutely a necessary part of our journey to self-awareness. They certainly have been for me. They are part of the duality through which new dimensions of understanding open up. But they are not the final destination of that journey.

Labels simply satisfy the need to find a shorthand way to explain our uniqueness to others. They’re only necessary, really, for this purpose. They’re necessary to help others understand why we are deviating from established norms and to advocate for ourselves in the external world.

Most of us who have sought greater understanding in labels didn’t do so purely out of our own curiosity. We just existed, and our existence didn’t seem strange or problematic to us because it was the only thing we knew, the only way we knew how to be.

You don’t realize something you do, or are, is “strange” until it is pointed out to you by others. It is only when others take issue with the way that we are that we then seek labels to explain to them, and to ourselves, exactly how and why we were out of synch.

Labels are truly only necessary as a replacement for the acceptance and empathy that our society lacks, as a whole. Labels are only necessary when a person needs a reason to extend empathy and understanding – when their empathy and understanding are conditional upon you meeting certain factors.

In other words, if you’re just “weird” then you’re worthy of reprove, disdain, social ostracism. But if you have the label of “autistic,” well, then, your “weirdness” exists for a “legitimate” reason, and a certain measure of empathy and acceptance can then be meted out.

If the world wasn’t so stingy with acceptance of people as they are, we wouldn’t need labels to give us a pass for being who we are. Alas, that is not the world we live in (not yet, anyway.)

In the world we do live in, labels, are mirrors that can reflect important aspects of our beingness back to us and reveal elements of ourselves, in the context of perspectives outside of ourselves, that we perhaps otherwise could not see. In that regard they have tremendous value.

But they should always be directing us back to our center of awareness, like a guide sending us home after taking us to the top of a mountain where we can gain a better view of where and how we fit into the whole landscape. They should be a tool for increasing awareness, not mistaken for being the awareness, themselves. And we shouldn’t wait to accept ourselves, or to be accepted by others, until we have these labels.

I am now at the point in my journey where I am returning home from a long expedition into ever refined external categorization with a greater understanding of how this corroborates and clarifies my authentic, truly unique beingness and experience in the world. I have satisfied for myself and for others how and why I am different and established that it is indeed not a bad thing, but a way that I contribute to biodiversity within our species. Now, I am ready to fully embrace my individuality in this new context.

I am now at the part of my journey where I am returning to my center of awareness and to the ways that I existed before being named and ranked and filed in the context of the world, with a greater dimension of understanding and the confidence to be exactly as I am.

And I am ever grateful for the labels that acted as guides for me on this journey.